My hospice story: Loretta
Loretta is 58 and has PH in association with connective tissue disorder. She is supported by her local hospice in Crawley.
“I was diagnosed with PH in February 2019 and a year later, my specialist suggested I talk to the palliative care team at the hospital. I was horrified. My immediate question was whether that meant I was going to die, and I assumed there was something they weren’t telling me.
But everything was explained to me, which made me feel much better, and I was referred to my local hospice – who have been absolutely wonderful.
It was just after lockdown started so a lot of the support was remote. I had counselling sessions over the phone, which really helped me come to terms with my diagnosis. And I had physio sessions via video call, which helped with my mobility issues caused by breathlessness and the tight skin as a side effect of scleroderma.
I saw the lymphoedema nurse onsite at the hospice to help me deal with the swelling in my legs (a side effect of cancer treatment I had before I developed PH) and I was surprised by how warm, cheerful and non-clinical the environment was.
The hospice has also been instrumental in managing my pain relief and liaising with my GP, and overall, I have found their help and support invaluable. The hospice care complements the care of my specialist centre very well and they offer support for family members too. My partner doesn’t need it now, but it’s very reassuring to know that it’s there if and when he does.
I think it’s important that people realise there is a difference between palliative care and end-of-life care.
People automatically think hospice care equals cancer and death, but it’s not just about people who have cancer and it’s not just about dying. It’s about helping you make the most of each day.”